I’ve had an under active thyroid for 26 years and recent blood test show antibodies are over 1000? Shouldn’t my antibodies have come down as I’ve been on thyroxine for 26 years? I’m not sure if I’ve ever had antibodies tested before. Recent test shows my ft4 is over range and went up after reducing my dose, also my tsh has been suppressed for years. I thought antibodies were meant to come down if tsh is low.
High thyroid autoantibodies : I’ve had an under... - Thyroid UK
High thyroid autoantibodies
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Tjqui00
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SeasideSusieRemembering
Tjqui00
The antibodies confirm that the cause of your hypothyroidism is autoimmune, this is referred to as Hashimoto's by patients. The immune system attacks the thyroid and gradually destroys it resulting in hypothyroidism. The Hashi's is treated, it's the resulting hypothyroidism that's treated.
Antibodies fluctuate and there can be fluctuations in symptoms.
When the immune system attacks the thyroid the dying cells release thyroid hormone into the blood stream, and this causes FT4 and FT3 to increase so they will probably be well over range, and the TSH will be suppressed.
Eventually these high levels will reduce and you will likely become hypo again.
Don't let your GP reduce your dose of Levo at these times because all you need to do is reduce your dose temporarily, inevitably you will need to go back to your normal dose at some time, if your GP reduces your prescription it may be difficult to get it raised again.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Gluten/thyroid connection: chriskresser.com/the-gluten...
stopthethyroidmadness.com/h...
stopthethyroidmadness.com/h...
hypothyroidmom.com/hashimot...
thyroiduk.org.uk/tuk/about_...
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.
My tsh has been suppressed for years so shouldn’t my antibodies be lower? Is it possible my antibodies could be higher because my ft4 is over range. It’s 19 now, 3 months ago was 17 when normal range goes up to 14.4. I had reduced my dose very slightly as well. My doctor has agreed to let me stay on 100 and retest in 3 months and then if it’s still too high, said I need to reduce to 75. I’m more concerned about the antibodies at the moment.
I’m more concerned about the antibodies at the moment.
They're not a problem, they have a job to do. As long as your immune system is still actively attacking your thyroid then you need the antibodies to mop up the mess.
If your TSH has been suppressed for years then it's quite likely it wont come back into range. Mine has been suppressed for as long as I've been keep a record of my results (since about 1995) and I have no idea what my results were for the 20 years before that (I was diagnosed in 1975). I have suppressed TSH even when my FT4 and FT3 show less than mid-range. I think the most striking of all my results was this one
TSH: 0.4 (0.27-4.20)
FT4: 15.6 (11.8-24.5) - 29.69% through range
FT3: 2.8 (2.8-7.1) - 0.00% through range
So my TSH was actually in range (it had increased from 0.02) and my endo was very happy, he'd achieved what he wanted (an in range TSH) but he failed to acknowledge that with these results I was extremely ill, it didn't matter to him, all that mattered was that my TSH was in range.
Did he agree to let you increase your dose? I keep getting told I’m at risk of strokes and bone problems with my TSH suppressed for so long.
Should my immune system still be attacking my thyroid after all these years?
Did he agree to let you increase your dose?
No, he was a sadist and I binned him off. Went to see my GP, told her what happened and said I'd never go back to see him, she agreed with me and increased my dose.
I keep getting told I’m at risk of strokes and bone problems with my TSH suppressed for so long.
This is where most doctors are ignorant. They think a low/suppressed TSH is going to cause osteoporosis, atrial fibrilation, etc. This has been debunked - see 7 myths of hypothyroidism on ThyroidUK's website and scroll down to
The myth that a suppressed TSH leads to Osteoporosis
thyroiduk.org/further-readi...
You might find these previous posts on the forum helpful
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He confirmed, during a talk he gave to The Thyroid Trust, that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw
He's unlikely to say that if there is evidence it will cause osteoporisis (or AF).
It's not suppressed TSH that's a problem, we need to keep an eye on FT3.
Unfortunately a lot of doctors/practioners still need educating!
And check out Diogenes post (Diogenes is Dr John Midgeley, scientist, thyroid researcher and advisor to ThyroidUK):
healthunlocked.com/thyroidu...are-my-doctor-and-endo-correct-that-my-tsh-being-suppressed-is-not-good-and-i-should-lower-my-levothyroxine?responses=148335853
Should my immune system still be attacking my thyroid after all these years?
With Hashi's, as long as your thyroid is not completely "dead" then the attacks will continue.
thank you. I phoned the thyroid helpline today and they said the test that’s important is the TSH and I need to reduce my dose to get that into the normal range!
. I phoned the thyroid helpline today
Who is this thyroid helpline, it wouldn't be the ThyroidUK one.
they said the test that’s important is the TSH and I need to reduce my dose to get that into the normal range!
They are wrong, the FT3 test is the most important one, TSH is not a thyroid hormone , it's a signal from the pituitary and can't tell is our thyroid status. It's useful for diagnosos but once on thyroid hormone replacement it's the FT4 and FT3 , the thyroid hormones, amd mkre particularly the FT3 that are important.
I phoned the British Thyroid Foundation.
Do you think my feritin of 48 is ok? My full blood count results were all ok.
Whilst ferritin tests vary a bit, in general I agree with the view often repeated here that your ferritin should be at least 70, and quite possibly higher than that.
However, it is very important to realise that testing ferritin alone is insufficient to determine whether you are iron deficient. A significant part of the reason being that ferritin rises when we suffer inflammation of any sort. You need a more comprehensive set of iron and Full Blood Count results to be absolutely sure.
No-one, anywhere, should ever say that a ferritin of 48 is fine.
Do I need to worry about my feritin? The full blood count results were all ok: white blood cells, red, haemoglobin haematocrit, mean cell volume, mean cell haemoglobin, mean cell haemoglobin, red blood cell distribution width, platelet count, mean platelet volume, neutrophil, lymphocyt, monocyte count, eosinophil and basophil count. Were well in range,
That’s what I was worrying about, that inflammation could cause my feritin to be higher and it would be even lower with no inflammation, I’m worried about the cause of it.
The very last thing you should do is worry about it.
Relax.
Good that the Full Blood Count (which is usually more or less what you have just listed) is within ranges.
A full iron panel (or whatever it gets called) would likely include Serum iron, Iron Saturation, Total Iron Binding Capacity (TIBC), Unsaturated Iron Binding Capacity (UIBC) and, of course, Ferritin.
Even if you are iron deficient, or simply have slightly low ferritin, it can take at least weeks, likely months, to rise even if you take supplements and increase the iron in your diet. Iron usually changes very slowly. That is why worrying is both totally understandable but also unhelpful.
Look at it as a good thing it isn't lower. A good thing you have the chance to do something about it.
The cause? Could be as simple as poor absorption due to being hypothyroid. If it were anything worse, it's likely one of the other results would indicate an issue. And ferritin might be much lower - and continuing to fall.
I’ve never had it tested before, so don’t know if it had fallen. I’m having it retested in 3 months.
The cause I’ve got myself worrying about is internal bleeding, for eg colon cancer. It says with ferritin 30-100 clinical correlation is required. Causes can be malabsorption, celiac and bleeding. I’m not having periods now.
I could go on and say that is very unlikely. But nothing like that really helps very much - however true.
That list misses having inadequate available iron in your diet as a cause. Which seems pretty common especially with the number of low and no meat diets - for any reason.
You have a clear possible cause - malabsorption - and I know nothing of your diet.
This is an extremely common issue here. Again, that doesn't help you much, if at all. And many have had far lower ferritin and, by appropriate treatment, have seen their ferritin rise to very acceptable levels. Remember, NICE nowadays say ferritin should be at least 30. But many labs in the UK have the low end of range even lower than that - 15 or 20. With patients being told they don't have an iron issue at all.
I do eat a varied diet with meat and red meat. I do drink a lot of tea though which doesn’t help with iron absorption, so am going to cut that down and not drink near meal times.
Would I be better waiting longer than 3 months to get it retested?
I'm glad you are making some changes!
I do not think waiting longer is a good idea. We often see people testing too frequently - but the issue isn't that time gap itself.
It is that if you can only have a small number of tests (e.g. four per year), how best to space them out?
Have one in 3 months and use it as a progress check. Leaving it, say 4 months, would probably make little difference to the numbers but would leave you anxious for an extra month.
If the test in 3 months shows positive changes, even if only slight, then you should be in a better place and not feel so concerned.
If the test in 3 months shows negative changes, then you need to do something else. More testing, higher iron intake, etc. But even then, you at least have another test in place to support further tests.
thank you. Sorry for all the questions, but do you think inflammation caused by the thyroid would raise ferritin a lot, like mine could be as low as 5 if I didn’t have inflammation? Sorry for being annoying!
I doubt it could be anything like that low. But I am absolutely not an expert on ferritin and iron!
I suggest a more likely scenario is that someone could have ferritin at 30 (i.e. lowest end of range according to NICE) but might see a more satisfactory 45, or even 60, if suffering a lot of inflammation.
If there were only 5 to start with, it might well mean there simply wouldn't be enough iron in the body to reach 30, let alone much higher.
Everyone has to ask the questions to which they need answers. I use the word "need" very intentionally.
I'm not sitting here thinking "Tjqui100 is trying to dream up awkward questions"! Of course you need these answers.
if you've never had then tested before , then they may well have come down .. ie mine were >3000 at diagnosis. then 15 yrs later they were 195.
As for your recent high /higher fT4 .. just out of interest ~a similar thing that happened to me a few yrs ago .
I used to take 150mcg for yrs , then shortly after menopause i became overmedicated and the dose was reducing a bit to125mcg , and the symptoms of overmedication went away ( my fT4 had been a little bit over range , but not much 19.9 [8-18]....but my TSH was lower than usual (0.018 instead of my usual 0.05 ish) .. but the symptoms of overmedication had been very obvious.
(Becoming overmedicated on 150mcg was probably due to changes in estrogen level after menopause~ estrogen affects T4 binding by altering the amount of TBG produced Thyroid Binding Globulin)
but then a couple of yrs after that.... my fT4 went way up to 20 [7.9-14) and dose was reduced to 112.5mcg (even though i felt perfectly ok),
and weirdly , the fT4 went UP again to 22.7 ...GP thought i'd misunderstood instructions and increased dose . but i hadn't.
Dose was eventually reduced again to 100mcg but that left me with horrible symptoms of undermedication (chronic constipation /total zombie) .. fT4 was lower but still over range at 19 [ 7.9 -14] ........ so we had a row and he reluctantly agreed to g back up to 112.5mcg despite the high fT4 .
6 mths later , fT4 was down to 16.6 [7.9-14]. even though dose had been increased, and TSH was weirdly high for me at 1.9 .. but i felt ok and have remained ok on 112.5mcg since then .
I'm not sure of the explanation for the fT4 going whacky ~ possibly an attack on thyroid by immune system leading to temporary high fT4 levels that later went down by themselves , but i dunno ,as this went on for many months..... it didn't make me feel overmedicated even though the fT4 was way over range .
If it WAS due to an autoimmune attack ,and if my antibodies had been tested at this time, then you'd expect them to be higher than 'my usual' ..... as a result of the attack..... but they weren't tested ,and i don't know what my 'usual' is anyway cos they don't test them often .
*note TPOab are the RESULT of autoimmune attacks, not the cause . they are basically 'clean this up' labels that get stuck onto any spilled thyroid peroxidase which comes from inside the thyroid when it is damaged )
If they are lowish and then there is an attack .then you'd expect them to be higher after wards for awhile. then go lower again . Over many years you would expect them to generally lower anyway because once most the thyroid has been destroyed there is presumably less thyroid peroxidase to spill... but the truth is we don't know much about it , because they are not tested often enough to ge any decent research done in order to see what's actually occurring.
Not sure how any of that waffle helps you ,but just so you know ~ weirdness happens, and it's not always easy to explain, especially when we don't have all the information.
thank you. Hopefully that’s what is happening with me as I’m going through the menopause. Hope my ft4 comes back down into range in the next 3 months or I’ll be told I have to reduce to 75.
if a reduction is necessary i'd go for lowering by just 12.5mcg initially (to 87.5mcg) rather than a full 25mcg . ( this is usually prescribed as either 75mcg / 100mcg on alternate days .. or you can cut a 25mcg in half if you prefer to take same each day . i do that as i don't like alternate dosing)
I’d have to tell my doctor if I’m doing that so she can prescribe that, but then risk her not increasing my dose back to 100 again,
not necessarily .. you can do fine adjustment using 100's if necessary . eg
cut a 100 in half and take 100x 6 days / 50 x 1 day = 650 a week = 92mcg day .
100 x 5 days / 50 x 2 days = 600 a week = 85mcg / day
100 x 4 days / 50 x 3 days = 550 a week = 78 mcg / day
( when doing this sort of thing , its best to space the 50mcg days evenly over the week rather than next to each other )
Recent test shows my ft4 is over range and went up after reducing my dose
This suggests that you're having, or have just had, what we call a Hashi's 'hyper' swing which would be why the antibodies are so high.
The immune system attacks the thyroid, wrongly mistaking it for the enemy, and the dying cells deposit their stock of hormone into the blood, causing levels of FT4 and FT3 to rise and the TSH to become suppressed regardless of dose.
At the same time, the proteins used in the manufacture of thyroid hormones, contained in these cells - Thyroid Peroxidas (TPO) and Thyroglobulin (Tg) - also escame into the blood, where they shouldn't be. So, the TPO antibodies and Tg antibodies come along to make sure they are removed and disposed of. When the blood is 'clean' the numbers reduce, but that can take a while. It's not instantaneous.
I thought antibodies were meant to come down if tsh is low.
That's the theory, but it's not really as simple as that. And, it doesn't really matter, anyway. Your antibodies are high because you have Hashi's. The antibodies do not cause the Hashi's.
that’s very helpful, thank you. I’m being retested in 3 months, well my TSH is. I’m going to ask if they’ll do an antibody test as well. If it’s still showing ft4 too high and TSH suppressed, they want me to reduce down to 75 mcg or see an endocrinologist.
If I were you, I'd drop my levo now, before testing, just to make sure you don't get it reduced by your doctor. As SeasideSusie said, if the doctor reduces it, you may find it impossible to get it raised again when you need it. And an endo is unlikely to be any better informed than the GP.
Why do you want your antibodies retested? It's irrevelvant. 
Do you mean drop my dose but not tell my doctor? And by how much? I’d like to see if my antibodies come down. At the next blood test, I’m also being tested for celiac disease so I can’t cut down on gluten yet.
Yes, I mean dropping it temporarily without telling your doctor. You do not want him changing your prescription. OK, that might be controversal, but it's what I would do. It would reduce your FT4, although might not have much effect on the TSH because that moves much more slowly.
Sorry, I can't understand the thing about antibodies. What does it matter if they do or they don't come down? Even if they disappeared completely, you would still have Hashi's/hypo.
I didn't suggest you should cut out gluten, I think that must have been SlowDragon? But good you're being tested for Coeliac. Just remember that the test isn't fool-proof. There are a lot of false negatives. And, also, it won't tell you if you're gluten-sensitive rather than full-blown Coeliac. A lot of Hashi's people are gluten-sensitive. And, the only way to find out if a gluten-free diet helps you is to try it - 100% gluten-free for at least three months.
That’s very helpful.
So yours came down a lot after 15 years. My result just said over 1000, so I’m thinking that could be anything over 1000, could be 3,000 or 5,000 or would the result have then said over 2,000 or over 3,000 etc? It does seem very high though 26 years after first diagnosed, because I would have thought my thyroid would have been destroyed years ago. Maybe I have an attack going on as my ft4 has gone over range.
My ferittin is 48 which I’ve been told is fine. I’ve been thinking, if I have inflammation from the antibodies, then my ferittin should be a lot higher as inflammation raises ferritin and so does an overactive thyroid I think and with my results showing I’m over replaced, I’m thinking shouldn’t my ferittin be higher because of that as well. Maybe I’m worrying too much about it all.
Well yes they were lower , but remember i have absolutely no idea what they were doing in between , or since .
they could have been much higher/ lower in the interim, and could be much higher/ lower again now.
if a result is shown as > 1000 it just means that particular test platform can't measure accurately above 1000 , so they don't bother because it it doesn't really matter how much higher than 1000 it is. they already have the information they need , it confirms that the cause of your hypothyroidism is autoimmune.
eg my first one was 2499 [0-50] and 6 weeks later it was >3000 [0-50] co e that test could count over 3000 some have had result reported as high as 6000.. it just depends on the capabilities of the test used.
It probably takes many many decades for most of us to end up with 'no functioning thyroid at all' , and even then it's still 'there' ,, (probably like a dried out shrivelled up bit of old boot leather , but it's still there , it doesn't disappear even when it's too knackered to produce any significant amounts of T4/T3.
Yes, your thyroid would appear to have been attacked fairly recently (or indeed currently) by your immune system, hence the high fT4 and very high antibodies .. or at least that is what we have to assume .
Re the low TSH and the advice line saying that TSH is the most important result ... who did you phone ? if it's one of the mainstream patient advice lines such as the British Thyroid Foundation , then they will say that , (they are very closely affiliated to / controlled by , the BTA ( the professional organisation for Endocrinolgists) ,, so they will just spout the Status Quo at you , as they have no choice .
I'd recommend you do more reading so you are in a position to make up your own mind about how much it actually matters to you .
Comprehensive list of evidence / reading here about low TSH / Risks vs Quality of Life here : healthunlocked.com/thyroidu....
Seasidesusie is a better person to ask about ferritin. ( above my pay grade lol)
reading that, it says there is an increased of atrial fibrillation with suppressed tsh. Mine is <0.02.
Risk is relative .. to quality of life .
The risks (for all sorts of things) are shown by the same studies to be worse with a high TSH (eg 7/8/9/10 ) than with a low TSH , and yet NHS don't say a dickie bird about those risks.. in fact they are happy to completely ignore a TSH of 9.999 and won't even bother treating sub-clinical hypothyroidism at that point unless you force them to.
ps re lowering the antibodies , some would say that different diets will have this effect t eg Gluten free , or Autoimmune protocol diets etc....and if you want to try , then do so . it certainly won't do you any harm.
'lower' antibodies would logically indicate that 'less' autoimmune attacks have been happening ..so if you make dietary changes and this is the outcome (less autoimmune attcks on the thyroid, and anything else the immune system is attacking) .. then that's all well and good , it's a perfectly good aim to have and you may feel generally better for it .... but the antibodies you currently have are helping to clean up the mess , they didn't make the mess. and once they have gone away .. you haven't undone the attack that just happened , that particular bit of your thyroid is still 'kaput'.
Being pragmatic about it .....since you are already on levo , i can't see much advantage in worrying too much about how to stop it getting attacked further .. even if you did , it wouldn't mean you could take less levo , or could go back to life without levo , What's already gone is... gone.
Personally , i'm not a huge advocate of 'trying' to reduce them anyway .mainly .because my huge reduction happened while continuing eating as i did before (including eating donuts for the last 20yrs ) so i reckon they'll go down anyway .
I’ve read that high auto antibodies are highly likely to cause high ferritin and that ferritin under 100 is then iron deficiency, so mine is very low at 48.
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